Filling the gaps in adult autism research

Autism has always been considered a condition of childhood. For years, it was thought of as a childhood version of schizophrenia. Its first appearance in the DSM diagnostic manual was as Infantile Autism.

But autistic kids grow up and become autistic adults. And just as the services and support for autistic people dry up as they reach adulthood, research on autism overwhelmingly focuses on kids rather than adults.

With this in mind, my colleagues, Stewart Einfeld and Pat Howlin, organised a small “roundtable” meeting of Sydney-based researchers (including myself), clinicians, and representatives of local autism service providers.

The result was a short report, the full text of which can be read here. It’s not meant to be a definitive statement – just our combined attempt at summarising the state of adult autism research and identifying the gaps (which are many and huge).

Here’s the Conclusion in case you don’t get that far:

Gaps abound in research, policy and service delivery in relation to adults with ASD. The very limited available information indicates that far too many individuals experience poor outcomes during adult life. This situation is unacceptable for individuals, distressing for families, and a lost opportunity for a positive contribution to society.

Researchers must generate the knowledge to enable effective, evidence-informed policies and services to be developed. The way forward involves action on multiple fronts: the development of better diagnostic and assessment methods for adults; research on trajectories throughout adulthood, including longitudinal studies, factors that affect adult trajectories, and the long-term effects of interventions in childhood; systematic study of identification, causes and treatment of co-occurring problems during adulthood; and a focus on issues related to subgroups of adults with ASD.

Recent collaborations formed to address this issue offer reason to be optimistic the challenge can be met.

We’re keen to get feedback. If you’re an autistic person, or someone who loves, cares for, and/or works with a person or people on the spectrum, we’d love to know what you think. What do you agree with? What makes you shake your head in disagreement? What have we missed? And what should the priorities be going forward?

16 thoughts on “Filling the gaps in adult autism research”

I’m autistic with learning difficulties, so am probably not the kind of person whose input means anything to anyone, but here goes.

It would be interesting to see research into gender identity and autistic adults as this certainly appears to be an increasing issue among my fellow autistics at the advocacy charity I volunteer with.

Secondly, I feel that there needs to be research into parental abuse of autistics and how this can affect us in adulthood. Don’t get me wrong, I get that most parents are amazing, but for me and the minority of autistics abused in childhood, there is no specific information, resources, support or even much acknowledgement that we exist. Yes, there are various charitable organizations for abuse survivors, but as far as I’m aware none offer support tailored to the needs of autistic abuse survivors. I’ve even written to the National Autistic Society and also Professor Baron Cohen about this in the past, but they both said they had no information they could provide on this issue.

Finally, I personally would like to see more research on how access adjustments can be made by non-autistics (e.g. in their behaviour, buildings, services etc.) to genuinely help autistics and take a step towards true inclusion. I get so fed up, as an autistic, of “interventions” that are about making autistics change our natural ways but put no onus on society to change and accommodate us. Surely true equality would be both parties trying to meet halfway or as close as possible to that?

Anyway, like I said, I’m autistic with learning difficulties and I’m no scientist, so I don’t know if my thoughts are even of interest.

Finally, I agree completely about the need for autistic and non-autistic people to meet half-way. There’s a tricky balance between recognising that autistic people are different rather than inferior, and doing this in a way that doesn’t downplay the very real difficulties that autistic people face. I think we’ve still got some way to go here.

As an adult diagnosed at 21 with epilepsy and again in 2013 (an NHS issue with accepting US diagnoses), and autism in 2013, I feel that there need to be more research on comordibity of the two. The main focus seems to be ep & aut with LDs, but not without. I would love to see that rectified.

There is increasing interest in gender identity, sexuality and sexual health. I remember an old definition of sexual health as something like “having the sex you want (including none), without harm to yourself or others”, but can’t find a source. Gender seems more fluid in autism, with far greater acceptance by autistic people that it is not binary or fixed. There is a need for practical books and intervention, especially around settings where service providers see themselves at risk for not protecting autistic people from sexual interest. (Obviously there is a large literature documenting increased risk of sexual abuse in childhood and lifetime risk of exploitation, which creates a difficult balance).
Growing old is a neglected area – is autism more pronounced, less important, or simply other ageing issues dominate? Growing old disgracefully is certainly acceptable now, so you can just be your autistic self, if you can be independent. Not sure what happens when age forces you to be dependent.

While I’d agree with some of these priorities and the comments made by others here, I would like to add a few points.

Research in the field is predominantly looking at the autistic individual and internal processes. I would like far more social research to be conducted, plus more autistic participation in research teams and setting agendas for research rather than tokenistic gestures. I very much would like to see more work in the area of design and the built environment, the disabling attitudes of non-autistic people, and so on.

Looking at your report, I’d also be concerned about the use of the term ‘savant skills’ – I’d point you toward the essay written by Larry Arnold for the Autonomy journal where he deconstructs the use of this term.

Hi
As a female dx aged 31, I’m naturally concerned w female assessment & dx, including refining criteria which can lead to earlier, accurate distinction between ASD and other conditions.
I’m also concerned w families where there is a sibling w significant and diagnosed disabilities where other sib(s) may be overlooked – this was my position. Given that we know siblings have a stronger statistical likelihood of being affected it feels important to open discussion into how this is handled w healthcare professionals involved.
Working longitudinally w families where there are parent and child ASD dx’s feels important especially w narrowing down the most effective coping strategies.
I’m unsure if it’s viable but a thematic analysis of published accounts by autistic adults would be interesting; raw blog material too.
Thanks, Zoe

I’m so glad you’re working on this! And that you’re actively seeking feedback from autistic adults. I hope you’ll consider incorporating that into your recommendations at some point (that researchers continue to consult non-researcher autistic adults on research and treatment priorities).

The main thing I see missing is research on effective therapy for autistic adults, especially effective treatments for complex interpersonal trauma. We have very high rates of abuse, both via school bullying and via vulnerability as adults; abusers single us out because we are less likely to have protective social support and less likely to be able to identify when something is wrong with a relationship. In family and romantic relationships, but also at work, in college or graduate school, in social settings, in medical settings, and by carers. Treatment for complex trauma even for non-autistic people is minimally developed, frequently completely unavailable, and tends to assume that all trauma is safely in the past, which just isn’t true for us.

Relatedly: Research that actively checks for harmful effects of standard therapy approaches, both long-term effects of childhood therapies like ABA and short-term and long-term effects of CBT and talk therapy. The most common issues I hear about for adult-oriented therapy are attempts to convince us we’re not autistic and don’t have the difficulties or experiences we describe, and attempts to make us appear normal at the expense of helping us develop coping skills.

The other thing I see missing that’s a huge issue for autistic adults is sensory oversensitivities. We desperately need effective treatment.

The biggest general research question I have, though, is not about autistic adults, but about providers: What interventions are effective for raising knowledge among healthcare and other service providers about autistic adults’ existence, appearance, and specific needs? And beyond knowledge, what interventions actually alter providers’ responses to our needs?

I should add – I’m a former autism researcher as well as an autistic adult. I co-run the #autchat community on twitter, which has weekly chats for autistic and similarly neurodivergent people. I’ve heard a LOT about different issues autistic adults face, and would be happy to talk more in-depth with anyone interested. You can contact me at my firstname.lastname at gmail.

I follow you on twitter from one of my accounts. Can’t remember which. As an autistic adult, and academic, and an academic who sometimes works with autism related issues, I think that the real problem is non-autistics. Don’t get me wrong, some of my best friends are neurotypical. Actually most, but it is like they all lack theory of mind. They seem to only be able to imagine the neurotypical brain and even go so far as to think that just because all the NTs are within a certain set of parameters that they can understand each other and call it a theory of mind. 😛

If you’re going to get anywhere with researching autistic adults you first have to stop including autistic adults in your research. Seriously. Start working with autistics to help them set up a research agenda, and support them researching themselves. That’s when you’ll actually get some useful insights. But if you start with an NT lens you only really end up looking at yourself.

Thanks Jason. I really like the idea of supporting autistic adults to set research agendas – and possibly even conduct research themselves. I think it could be great if done well. Do you have ideas or experience about how this would work in practice?

Yep! We’re just finishing a small research project aimed at developing a tool to help autistic youth transition to higher education by myself and an autistic doctoral student (mostly her) and a NT doctoral student. The real issue is the conceptualization of research problems (something NTs struggle with too often enough) based on shared needs, goals, interests, needs and aspirations. Too often the agenda is already set by NTs to meet their needs, goals, interests, needs and aspirations. IF there’s any interest at your end in collaborating on developing some criteria for autistic directed inquiry (ADI) I’d love to share all my points and collaborate on that. I’m sure it would be globally useful. Cheers!

We warned the AMA about autism in 1977, professors were fired, data buried, and University’s threatened if the data about the cause of autism were to be released. Therefore, if you research under the current reality of autism, you will fail. We formed a modality that corrected autism and not allowed.

I am the mother of a high-functioning autistic. She is brilliant and can be very witty or quite moody. I have learned that most of the time upon meeting her in a room, I don’t speak unless I am spoken to. She continually mellows with age and she cares very much about her friends and people in general. She has trouble taking care of adult responsibilities such as paying bills, keeping the grass cut, making phone calls such as to make a doctor’s appointment. I have paid off the house so she will have a place to live when I am gone but she will need a manager to keep the lights on and the house maintained.
My sister has a son who is very bright but is terribly forgetful, has serious learning disabilities about reading and may never drive. Even if they one day support themselves entirely, these adults will need assistance when their parents can no longer meet the need, but who will. I hope to leave a large insurance policy, but money has to be managed. There is a organization called IKOR that does these sort of things for the elderly and the disabled, but at what cost I haven’t been able to find out. And if a person can’t afford it, then what, is there a charity to provide such services for those who don’t need a keeper but do need a manager?